Sadly once again I have had to go into hospital, Leighton Hospital in Crewe in England. I have lung damage caused by 3 severe bouts of Covid infections, two of which were caught within the hospital, the third from my husbands Carer.
Although there are doctors at this hospital who have saved my life on more than one occasion, there is a gross ignorance about any conditions that are out of the 'normal' experience of most doctors and other medical staff. Sadly tracheomalacia and RLS both fall into this category.
Recently I spent 5 weeks in this hospital. I was admitted with pneumonia but with 4 days had caught norovirus and having recovered from that, a woman was placed in a bed next to me who had COVID. Four days later I became very ill.
I take a minimal dose of pramipexole (1.76micrograms twice a day) supplemented by Gabapentin 300g to control my RLS. Without this I suffer from very severe symptoms which affect all my skeletal muscles .. that awful feeling we know so well in all muscles.
This hospital proceeded to withhold the pramipexole until the pharmacy could provide it. They took my own supply off me and wouldn't use it. I was moved from ward to ward and this happened 4 times. I had medicines withheld for up to 16 hours and at the least 6 hours. On top of a serious illness this made me feel as if I was dying. Doctors didn't know what was wrong with me .. with my body was randomly moving .. why I was in pain and tears .. THEY WOULDN'T LISTEN.
One Doctor came and insisted I told him about my diagnosis of Parkinson's .. Pramipexole is used for Parkinsons as well some other problems ... He was insistent and rude. He's never heard of RLS.
Not only that they persistently gave me drugs which were contraindicated against Pramipexole. .. Cyclazine for one.
By the time I caught COVID again I had lost all trust and was physically and mentally giving up. I eventually persuaded my consultant whom I told about what what happened to let me go home to be looked after by their Virtual Ward. The medics associated with this were fantastic and appalled at what had happened. I am thankfully now much better tho with little energy.
I don't know what to do to stop this happening again. Unfortunately there I will be inevitably be admitted again. Their behaviour is dangerous and injures me .. ie it is negligent ..
I have complained to the hospital but that seems to make no difference .. Ideas please??
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HilsK
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Legal action.UK hospitals have completely given up on infection control. The 'accepted' view by health authorities and ICD is that covid is mild and no precautions need to be taken. That's fine for most people, but for sick and immunocompromised, it is criminal negligence.
They refuse to do anything. I've complained to PALS at my local hospital, and was dismissed with the general UK hospitals view that Covid is not an issue anymore.
It is tragic. Hundreds are still dying and there are 2 million with Long Covid. Newspapers are full of reports of people unable to work due to sickness, but nobody is joining the dots.
Hepa filters in all hospital rooms would resolve this. But there's no more money.
As for taking your meds off you, I'm again, not surprised. It seems to be standard.
I suggest you write a detailed letter to the hospital department treating you and a complaint to PALS. Also copy in your GP surgery and the local MP.
Will do just that .. If they then knowingly do it again I'll go for them .. I recorded most of what happened in audio and video this last 5 weeks .. I will record everything next time.
I totally understand your anger and frustration. I caught Covid in hospital in 2022 and was incredibly ill for 6 weeks as I had zero immune system at the time. My mother broke her hip in December '23 and was discharged 2 weeks later with Covid caught from.a coughing nurse.But, wash your hands. Apparently that will stop you catching an airborne virus.
There was a post recently from a legal firm touting for business.. I would definitely get in contact with them ---- make sure it's on a no foal no fee basis.
The ONLY way we will get changed is through the courts.
I wish it were that simple Madlegs. Legal action only seems to be a 'sure thing' where monetary loss is clear. Like with ICD and the patient has gambled loadsamoney. But a decent legal firm will let you know whether there is a good chance.At the moment, we can't sue for failure to warn about augmentation or failure to treat it correctly, but hopefully, that will change.
When it's straight forward poor knowledge and treatment, doctors can rely on outdated NHS or hospital guidelines to say they were 'only following orders'. Covid is 'non existent' as far as UK hospitals are concerned. There is no protection for vulnerable patients.
Yes I already went to a solicitor and her said that there was a lot of sympathy for the NHS so many of the negligence claims he was getting (from the same hospital believe it not) were getting knocked back. He said that ignorance was an acceptable defence for a doctor who caused harm. I was horrified and VERY angry
Yes I think that you have to go through redress and there has to be a witness statement of physical injury that goes through the health board. To prove injury is extremely hard. I have won one settlement for physical injury due to botch surgery, but could not find a lawyer for psychological injury due to abuse.
There is something wrong with your statement that you are taking 1.76micrograms of pramipexole. That = 0.00176 mg and the smallest tablet or pramipexole is .088 mg, so you would have to take 1/50 th of tablet. Can you correct this so we know how much you are taking and maybe give you some advice.
That is horrible what the doctor did to you. What about Mid Cheshire Hospital?
Yes Leighton is Mid-Cheshire Hospital. It used to be a good little hospital .. now its a place of last resort. I've tried to get taken to Wythenshawe but they won't take me any where else even though Leighton don't know how to deal with my respiratory condition.
Oh - I didn't realize that Leighton is Mid-Cheshire Hospital. I was just looking on a map and since they had two different names at two different locations I though they were separate. That's terrible you have no alternative.
Hi sent you a private message about Dr Silver at Spire hospital. Wanting to know if you have a recommendation in Liverpool or Merseyside for a sympathetic RLS consultant
I almost can't believe how bad this could be taken "don't listen to your doctor, believe what you read on the internet". 99 times out of a 100 it would be lunacy, but in this case the informed ones posting here are much better informed than your well meaning family doctor! When I talk to my doctor I get a few basic words about my condition, maybe a sentence or two at best, whereas a reply here could easily be an entire page long with tons of detailed information. When I asked my doctor to check my ferritin in my next blood test he acted like he'd never heard of it. I'm not easily swayed but I'll go with the information from this site over my doctor who 'dabbles' in rls occasionally.
I won’t defend the staff that you complain about and the poor treatment you received- it is wrong and you must pursue your complaints.
On 6th April, I was blue lighted into my local A&E with what turned out to be cellulitis. From the quick action of my niece, paramedics and consultant I understand my life was saved in resus. Then began 36 hours of hell. I was stuck in a side room off a corridor with 7 other patients, 12 inches between beds, men and women, physical and mental health needs, too few staff and the impossibility of keeping it clean. I lost all dignity- the antibiotics, my left leg was a mass of blisters, all balance gone and a need to pass urine- I wet myself many times in front of anyone passing by. Horrendous.
And RLS? My meds were varied, given at different times or stopped. Why? Because the NHS is a monolith. It has inflexible “rules”. I tried to explain that I vary when I take Gabapentin in the morning according to when I feel RLS starting- I then take subsequent doses at earlier/later intervals- all this by agreement with my GP. It bloody works.
Computer (NHS) says “no”. Nearly every day for 2 weeks I had moderate to extreme RLS. I tried explaining, pressuring, complaining, but the “chain of command” is such that it takes a senior consultant to make any decision to vary “orders”. And finding that senior is nigh on impossible as my situation is classed as low (except of course, to me).
We have to change this inflexibility- I am starting to run (I have , before retirement, 40 years experience of doing this) a campaign to get more resources for A&E- apart from myself, I saw stuff that was 3rd world, in this country, the 6th richest on the planet- it is not acceptable for us, and staff who put their lives at risk during covid, now run ragged. It has to change- we have to change it.
And the system- I am not making a complaint but I am going to be a continuous “thorn in the side” of management. An email every week, targeted on the top Chief Executive and then downward (there are so many managers!!), challenging this inflexibility- yes, I will be unpopular and yes, I (and my numerous supporters) may fail. But in the words of a Trade Union adage - “if you don’t fight, you will certainly lose. If you do fight, you have a chance to win.”
It is a seemingly impossible task to get this changed but really we ALL need to take this upon ourselves to SHOUT AS LOUDLY AS WE CAN
I have just asked my GP surgery manager for a space to talk to the 12 doctors at this surgery. They have 24,000 people on their books .. that means that 2,400 of them are likely to have RLS at some level .. and they don' t know about it !!
Oh my God I really feel for you. Crewe is up the road from me in Stoke. I can understand how scary and frustrating it must have been. It’s disgusting that professionals like that have no knowledge of RLS and just don’t listen to us 🙁 I was in agony when I was actually giving birth in 1998 and the midwife thought I was being pathetic. Granted it was a long time ago but I’ll never forget how she made me feel. I would have punched her if I’d had the chance!!
I lived in Crewe for 18 years - My experiences of Leighton Hospital were fortunately not bad, but the general consensus at the time (80s/90s) was that it had it's problems ! It has clearly got worse but that may be the case with many hospitals too. Since covid / lockdown / jabs I have little trust in any authorities. My experience of Doctors is that they know very little about RLS ..... They need to go and research it ! .... and it definitely needs to be taken more seriously by the medical profession.
Yes Leighton USED TO be good. I USED to be able to trust them. All I know now is I come out in a worse state than when I am admitted .. a difficult thing to process when you have lung damage from COVID. They have really lost the plot now and are driven by a fast turnover of patients. Bed-managers rule the roost .. it's them who drive the 'early discharge' issues where patient require readmission. No one stands up to them.
This is awful. When you feel up to it, you need to complain. Have you been vaccinated? Are you immune suppressed? I had my 8th Covid vaccination yesterday. All the best to you.
Yes I had two vaccinations but they made me very ill as it did with some other people I know and I STILL caught COVID 4 times. The vaccines don't target the current strains. We each have to make our own informed choices as with everything. X
I have just put in a formal complaint to them which I have copied to my MP. I have also informed the CQC and the inspectorate. If doctors KNOWINGLY cause harm by their actions .. that is negligence. That is only the case if they are aware of the damage they do for eg withholding insulin from a diabetic etc etc . We need to make it clear what happens to someone with severe RLS if they withhold their drugs.
my heart goes out to my dear and prayers are forthcoming and forever,this is such a dire situation and I guess the squeaky wheel gets the grease as the old folks used to say,now we’re those old folks.❤️🩹
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RLS AND THE HOSPITAL STAY
Augmentation 
Dipyridamole didn't work for me
